Pages

Saturday, March 30, 2013

Trisomy Awareness Day 30

For Day 30 of Awareness, we would like to share another touching story that really shows what Trisomy Families is about: Uniting and Supporting..

In March, 2012, my husband and I were elated to find out we were expecting our first child. During a routine ultrasound on July 31, at 25 weeks, we were told there were some concerns with the findings. We were immediately sent for a level III ultrasound, which showed many markers for trisomy 18. The two biggest concerns were her heart and brain defects. We opted to have an amniocentesis, which confirmed our biggest fears: our daughter had trisomy 18. Soon after the diagnosis, I began researching and finding organizations for families with trisomy diagnoses, one being Trisomy Families. As soon as I was added to their facebook group and told my story, I had a new “family” that could honestly say they knew what I was going through. Much to my surprise, I found many parents with trisomy children living in their teens, something that online research and the medical community told me were pretty much impossible. Not only were there parents with living children in this group, but there were also angel parents and ones currently expecting a trisomy child. Very few women know what it is like to enjoy every moment you have during a pregnancy and grieve for the child you are carrying at the same time; these women did. I knew that no matter where I was in my journey, there was always going to be someone there I could talk to. After reading the stories and talking with other parents on Trisomy Families, we decided to let our daughter determine her own fate, and we would cherish every moment God gave us with her. Due to the severity of her heart and brain defects, we chose comfort care for her. Our main goal was to meet our daughter alive. On November 6, 2012, I gave birth to a beautiful baby girl, Kinsey Christine, via c-section; she weighed 4 pounds 10 ounces and was 17 inches long. Soon after I had her, I posted an update on Trisomy Families. The number of responses and words of encouragement were amazing. The response that really stuck out to me was from Kelly Whistler. She sent an in depth message to me with suggestions for interventions for every concern we had regarding our daughter. These were suggestions that had not even been offered to me. Kinsey passed away shortly after I was able to address these interventions with the physician. We were blessed with 23 amazing hours with our daughter. Although she wasn’t with us long, she made an impact that will forever change our lives and the lives of many others. Next came the devastating part of funeral planning. When deciding on where to send her memorial money, I came in contact with Marta McClanahan. She told me that their organization was just getting started. She then explained their mission and that they were currently working towards becoming a 501 (c)(3) organization. This group goes above and beyond to advocate for these children and support the entire family along the way. Due to the help they provided me, I knew this is where I wanted to donate Kinsey’s memorials. I wanted her memory to live on in a way that could help other families dealing with trisomy, no matter where they were in their journey. In March of this year, I was lucky enough to attend the Trisomy Families Celebration in Minnesota. The excitement I felt meeting the people who understood the journey I had been on was indescribable. I was finally meeting some of the people whose children’s accomplishments I had celebrated or losses I had mourned. This trip was very therapeutic for us as a family. Chinese wish lanterns, with messages to our children, were released for all the babies gone too soon. We were also able to attend a bereavement group to share memories through stories and pictures of our children. Our angel babies were even included in the slumber party with their names on stars, hanging from the ceiling. It was such a wonderful feeling having so many people affected by trisomy in one place. There is so much joy in meeting children that are thriving with trisomy. My experience with trisomy has not been an easy one, but because of Trisomy Families, I haven’t had to go through it alone. During this event, I realized how lucky I was to have found a trisomy family, and we made memories that I will cherish forever. with~Lindsey Woodford

No comments:

Post a Comment

Kayli's Story

Kayli was born with Trisomy 18, otherwise known as Edwards Syndrome. Kayli has been granted 8 miracles of life! The miracles include surviving: Full Trisomy 18, 32 minutes of anoxia, 7 weeks of Endocarditis and Sepsis without antibiotics, a perforated bowel, a surgically misplaced Gtube for 3 weeks, a pinhole sized airway for 3 weeks (resulted in a tracheostomy), a heart med overdose (10X the amount of Clonidine), a Potassium level of 8.2 (range is 3.5-5).
Kayli has 3 older brothers, each with their own, rare disabilities.
Claim'er: Although Kayli's pictures, videos, and information are public, it shall never be used against her. It is not permitted to use Kayli's information, videos, nor pictures, for sale or profit in any way. Kayli's Krusade is to openly share hope, knowledge, resources, acceptance, faith, and to spread God's testimony of Love. You are welcome to share her story with others, as long as the intent is for her purposes, and done with respect for Kayli, our child of God. ♥